Losing a Year of My Life to Lyme Disease: Why I Went MIA and What Happens Next

If you’ve been following my blog for a while now, you may have noticed some changes in the past year or so: the blog posts haven’t been as frequent, fewer of the photos I post on social media are mine, I’ve gone dark on Snapchat, and there’s not much evidence that I’ve been doing a whole lot of traveling.

Until now, I haven’t been very open about what I’ve been going through. Despite this being the most difficult year of my life, I’ve stayed quiet about it.

“Jeremy, you should be writing about this. Tell the world your story. Write a book!”

My friends have all been strong advocates for airing this thing out, but I didn’t want to burden the world with this train wreck of a story. Stories like this don’t usually “sell,” and even though I maintain a transparent voice and opinion on this website, it’s not a very sexy thing to talk about.

Plus, I’ve felt pressure not to go public with it for professional reasons. Because this website is my job, I fear that this story could make my brand less desirable to potential partners. But it’s been long enough, and I need to talk about it. I’m only human, and this is my current reality. You—my friends, family, and readers—need to know what’s going on.

The Beginning, When Everything Was (Sorta) Fine and Dandy

Right around this time last year I was traveling in the Middle East, visiting Israel, Jordan, Palestine, and Egypt. It was a pretty remarkable trip, and I did some very cool stuff that I almost couldn’t believe myself.

I was really excited to tell you about everything. I had some great stories, and there was a lot I wanted to say. But for some reason I was struggling to get it all on paper. Something was holding me back.

I’ve never been the type of writer who puts together two or three posts per week, that’s true. I can’t produce words that fast, and I’ve never had a desire to. I like writing, but I like writing only when I like writing. Know what I mean?

It took more than a month to start writing about my travels in the Middle East, and instead of writing everything I wanted to, I wrote one big article on each place (except Palestine), and I called it a day.

The ancient ruins of Jerash in Amman, Jordan

I felt like I was burning out. I was exhausted, tired of writing, blogging, and traveling, but I kept on going. I couldn’t stop—I had a whole summer in Europe ahead of me!

So I flew to Greece and began my summer crossing Europe from east to west by train. I made visits to Macedonia, Albania, Montenegro, Serbia, Hungary, the Czech Republic, and finally Germany. I did a lot of stuff in that time, and there was so much that I wanted to tell you about.

I had a world-shattering experience with refugees in Greece. I went to music festivals on the beach in Montenegro. I had the weirdest train ride of my life in Serbia. I spent a weekend tearing apart the bars in Budapest. And I finally made it to Berlin, my white whale, the city I’ve been dreaming of for years.

To be honest, I was kind of okay with that. I like writing long-form pieces that really dig into various elements of a place. I never feel as rewarded by a 500-word article because, sometimes, there’s just too much to say. So I focused my efforts on writing fewer, larger articles, and the response was actually great. You guys loved them.

A couple takes in the view at the Church of St. John at Kaneo in Ohrid, Macedonia

But something wasn’t right. I had begun to feel funny. I felt stoned. I was becoming anxious, emotional and lethargic. I’m usually a rational, level-headed, and energetic person, and I didn’t know what to attribute this change in my behavior to.

I pushed on, ignoring the fact that I didn’t feel like myself. The last thing on my mind was the fact that I might have multiple debilitating infections hijacking my brain and body and affecting every aspect of my consciousness. I thought I was just really, really tired.

And so after an exhausting (but rewarding) summer in Europe, I flew back to the States to see my family. And this is when things started to get weird.

When Bad News Changes Everything: The First (But Not the Worst) Diagnosis

I told my family how tired I was. I told my doctor how tired I was. “Get some rest,” they said. “You’re just burned out.” And I agreed with them.

But after a week at home, sleeping 12-14 hours every night and staying in bed for the remainder of every day, things didn’t get any better. My energy didn’t come back, and something wasn’t right with the way my brain was working. I couldn’t process basic information. I had begun to feel disoriented. It didn’t make any sense.

I was getting more and more fatigued, and my brain slowed to the point where I couldn’t even follow a conversation. I lost all of my spatial awareness and became a generally sluggish and lackluster person.

It’s a very peculiar thing when your everyday consciousness begins to shift. It’s not an easy thing to explain, and you risk sounding like an inpatient when you tell people that you feel confused and disoriented. “To the loony bin,” they’d say.

Fiery sunsets in North Carolina

It was a sunny day in North Carolina and I had borrowed my mother’s car to go to shopping. I had just put the car in park, and sitting in the driver’s seat in the parking lot, I found myself so offended by the intensity of the sunlight that I couldn’t get out of the car. The light reflected off the large white truck next to me and it struck my eyes so fiercely that I had to close them.

This isn’t normal, I thought. And that’s when I realized what was going on.

Ten years ago I contracted Lyme Disease in my backyard in suburban Boston. The onset of effects were the worst thing I’ve ever experienced—extreme confusion, severe fatigue, drenching night sweats, and an intense sensitivity to daylight.

When that familiar sensation came rushing back to me, sitting in the driver’s seat in that parking lot in North Carolina, I whimpered. It was the only thing I could do.

The next day, I high-tailed it to the local urgent care center and, despite the doctor’s peculiar opposition to the notion, I made her test me for Lyme Disease. It came back positive. I was prescribed four weeks of antibiotics and she sent me on my way.

If you catch Lyme Disease early enough, a few weeks of antibiotics (basically) does the trick. Since we had caught it reasonably early, I anticipated that my prescribed treatment would be suitable, and I prepared for my next jaunt to Asia. At the end of September, feeling slightly better but still on antibiotics, I boarded my flight.

This was, by far, the biggest mistake I could have made.

One Miserable Disaster of a Trip to Asia

With my medication packed tightly in my carry-on, I was excited to be heading to Cambodia for the first time since 2013.

I was on a press trip, working with a new sustainable tour company called Hands on Journeys. I was to accompany them for eight days volunteering in some local villages before heading to Bangkok for a travel industry conference.

For the first few days in Cambodia, the tour went well. I wasn’t 100%, but I figured it would just take my body a few weeks to recover. I finished my medication that week, and in the last couple days of the tour, things started to take a turn for the worse. One day in the village, more than an hour out of town, I had to request a private escort back to the hotel.

I was delirious and I just couldn’t handle the overnight homestay. But I kept pushing. I got this. No worries. I’ll be back to normal soon.

I’ve always been incredibly stubborn.

Inside Angkor Wat in Siem Reap, Cambodia

Flying into Bangkok for TBEX, I was greeted by a congregation of travel bloggers and industry folks. I was looking forward to talking to some brands about partnerships. My blog had seen some recent growth, and I was ready to talk business. Plus loads of my friends and colleagues were there.

Most people at the conference didn’t have a clue that anything was wrong. Why would they? I looked healthy. But on the second day of the conference I had enough energy to last one full hour. In the middle of the day, I packed up my bag, took a tuk-tuk back to my apartment, shut off the lights, got in bed, and stared at the ceiling for the rest of the day.

Now off my medication, I was supposed to be getting better. I tried so hard to act normal and to pretend that everything was okay…but things were getting much, much worse.

I spent the next month as a regular at Bumrungrad International Hospital in Bangkok, taking a surplus of medications and supplements, including a daily IV antibiotic that my lovely nurse shot into my arm.

By November, I had spent somewhere in the vicinity of $5,000 at Bumrungrad, and I still wasn’t getting any better.

Wat Traimit: Temple of the Golden Buddha in Bangkok

To the outside world I looked fine—I could walk and talk and eat and sit in a coffee shop like anybody else. But inside my head, something was very wrong.

Cognitively, I was paralyzed. My short-term memory didn’t last more than a few minutes. I was so fatigued that I couldn’t get out of bed in the morning. And I didn’t. But then at night I tossed and turned for hours, unable to find the sleep that I so desperately needed to escape the agony I felt during the day.

For a whole month I teetered on the verge of one colossal panic attack. I could feel my inflamed brain squeezing against the inside of my skull so hard I thought my head would pop. My vision became so altered I thought I was going blind. And the depression was so crippling that I wanted to die.

I tried watching movies but couldn’t follow the plots. I tried reading books but couldn’t absorb the words. I tried sending emails but couldn’t form comprehensible sentences. Somebody had flipped the on/off switch to my brain. It’s like I was developing dementia, but was completely aware that it was happening.

I felt like I was being waterboarded, but on the inside side of my head, all day. Every. Single. Day.

All the while, I was holed up in my Bangkok apartment, only leaving for my daily hospital run, some dinner, and sometimes a few bottles of water and some toilet paper.

A typical lunch from my local noodle spot in Bangkok

A Wrong Decision Leads to a Hard Decision

My travel plans for the next five months were as follows:

I was supposed to meet my friend Gabe in Bangkok and travel to the north of the country with him for ten days.

I wanted to keep traveling. Despite being totally debilitated, I refused to let this thing stop me. In my mental state, I still hadn’t wrapped my head around the severity of it, and the longer I put off cancelling everything, the longer I didn’t have to admit that I was dealing with a very serious problem.

Like I said—I’m intolerably stubborn.

Stepping onto the tarmac in Chiang Mai, with my friend in tow behind me, a knot tightened in my stomach. I shouldn’t have come here, and I knew it.

I abandoned my friend and four days later I was in Denver, meeting with one of the best Lyme doctors in the country.

Sunset on Kauai, Hawaii, on layover to Denver

Six Months Later…

I’ll spare you the long and drawn out details of what happened in the six months between then and now because they’re intricate and exhausting. The long and short of it is this: sometimes a Lyme infection comes with co-infections, and so far, in my body, we’ve discovered two.

You see, Lyme Disease on its own can be a very problematic thing to treat, and just those symptoms are miserable enough. But when you add another one or two infections to the pot, what you end up with is a really cruel form of torture.

Since starting treatment for the third infection, I’m happy to report that I’m making some progress. Admittedly, it’s slow progress, and I don’t honestly know if this is the final stretch. There could even be another infection that we haven’t caught yet—I’m hoping this is lucky number three. Only time is going to tell, and until then, I’m taking it easy. I have to.

And if this is the home stretch, it’s not something that goes away in a couple of weeks. This is something I will be treating for months, and it might be something I’ll have to manage, in some form, for the rest of my life.

I spent in a few days in Copenhagen at the holidays…

Since this all began, I’ve found it difficult to strike a balance between personal and public life. This has been a humbling, isolating experience. I want to be real about what’s going on, but as a travel blogger, I want to tell you about my travels, not my illnesses. Plus, a story like this isn’t totally conducive to getting paid to do what I do. And everybody needs to get paid.

What does a person do when they get so ill they can’t leave the house, but their only source of income is a job that requires them to travel?

It’s a tough place to be.

More than anything, I have become thankful, on a very deep level, for the fact that I work for myself. I don’t have to leave my bed if I don’t want to (or can’t), and on days when I’m feeling well enough to attend to this job, I’ve been able to make enough money to pay for my treatment.

And through all of this, the emails I get on a daily basis, and the enthusiasm I see in you, the people who read what I write, give me a reason to get out of bed in the morning. The community of people who read this blog have a thirst for this world that is unquenchable, and to me, that’s inspiring.

Resting up in Brussels for a couple months

The Chinese believe that sickness is a form of rebirth. Though it’s undoubtedly an awful experience, a debilitating sickness provides an opportunity for people to re-evaluate their lives. In one of my favorite, but least popular, articles, I talked about the importance of slowing the pace of our lives. Without a pause, we can’t appreciate movement.

After six years of travel, I talk a lot about slowing things down. But for some reason, I’ve been unable to do so. I’m so used to moving around that the real challenge for me is sitting still. This experience, though terrible, has been a lesson in doing exactly that.

I want to thank each and every one of you who reads this blog of mine. Though you may not have known it until now, the work I do here, the work I do for you, has carried me in spirit ever since this began. Every like, comment, and share has literally helped to pay the medical bills that will hopefully allow me to continue to lead the passionate and fulfilling life that I love. I genuinely couldn’t get through this without you.

Some Quick Notes About Lyme Disease

Lyme Disease is caused by the Borrelia burgdorferi spirochete, a spiral-shaped bacteria that digs its way into your tissue like a corkscrew.

Lyme Disease doesn’t manifest itself physically (with the exception of a rash at onset). To others, doctors included, someone with Lyme can appear perfectly healthy. Thousands of people suffer for years without a diagnosis.

Blood tests for Lyme Disease are only 50-80% accurate. This makes diagnosis difficult, and many go undiagnosed because of it.

Doctors who treat longer-term infections are scarce, which makes it a very expensive process. Insurance companies don’t cover most, if any, of the treatment. Lyme treatment is often paid for out of pocket.

We’re going to look back at what we know now in 50 years and it’ll be like bloodletting to relieve people of bad demons. —Tim Ferriss

If you (or anyone you know) has had, or think you might might have, Lyme Disease, please, please meet with a Lyme literate doctor (LLMD). Do not let the price stop you—your health is worth it. For more information on Lyme Disease and finding doctors, please use the links below.

132 Responses to Losing a Year of My Life to Lyme Disease: Why I Went MIA and What Happens Next

I am so glad you are on the mend, it is a long lonely road, but you have much love and support behind you. I am sure that your story will touch many of your friends and followers, just knowing you are on your way to recovery gives anyone with Lyme disease hope.
Good to see you writing again Jeremy, I have missed your posts!
Your Canadian Mom!
Xo
Dagmar

Indeed, it’s both of those things, but with the support of this community, it’s a lot less lonely. I hope that my story can help to raise some awareness and understanding about what people with Lyme go through.

Whoa. This sounds so similar to what I experienced in the past few years. I will get myself tested. thank you so much. So sorry you went through this… I felt like I was reading my own story while reading your words. Wow. Take care of yourself 🙂

Thank you for writing about this!
A year ago a friend of mine came back home from a holiday describing the exact same symptoms you’re describing, but no one knew what it was, so I’ll definitely forward your article to him, just in case.

I’m convinced sharing won’t affect your work/income too much. People want to read about great places and travel experiences, but the person living this life and sharing honest stories is just as important and interesting.
I think your blog is great and I’m sure that won’t change, no matter what you choose to write about (or how often or how much).

Take good care of yourself and do what feels right!
All the best from Austria,
Stephi

Oh no! To be honest, a lot of the symptoms resemble those of many low-grade infections (but just a lot worse, and for a lot longer). How is your friend feeling now? It’s definitely worth talking to a Lyme literate doctor to find out.

I remember when Garrett and I were in Bangkok at the same time you were and we tried to meet up but you couldn’t. I wish we could have helped.
I’m so sorry this has plagued you, but you said it yourself-you’re stubborn! So you won’t let this take over. It will pass. All the best. <3

That’s what’s plagued me for the past few months, but I reached a juncture where I just decided I didn’t care anymore. I could no longer hide what was going on. And if this blog isn’t a representation of who I really am, then it’s not worth having in the first place.

I, too, had a great time at that coffee shop in Berlin. We’ll do it again soon 🙂

Thanks for sharing your experience. I think it’s a really important post you’ve written, because while we all believe it’ll never happen to us, sometimes it does. It’s a reality of life. And isn’t that what bonds us together, shared experiences. You may have just saved someone’s life by writing this post, it may be the push someone has needed to go get themselves checked out, to slow down and reassess what they’re feeling.
Glad to hear you’re feeling better and I’m sure this’ll be a new jumping off point for newer and greater things 🙂

Wow. Thanks for the article. About a year ago, we had our first taste of traveling to Thailand & are hooked. We started up a blog, http://www.midlifebackpackers.com, started making plans and changing our whole lives to facilitate our dreams of backpacking the world as a middle aged couple. All the time, following your travels in admiration & a little jealous too. We were just about ready for our next trip & about to set off on a Thailand, Cambodia & Vietnam trip, when my wife was diagnosed with cancer. Long story short, we have had a hellish last 5 months, but will get through this and back to our next trip as soon as we can, as we cannot let this take away our dreams.
Your article is well written, open & honest and your willingness to write about this showing your vunerability is an inspiration to us & reminds us that we are all just human & prone to whatever life places in our path.
Hope you get 100% well shortly and back to your travels.
Keep on inspiring others to do the same.
Menno & Jannekehttp://www.midlifebackpackers.com

I kept checking back on your site for new posts so I knew something was up, I’m glad to hear that you found out what it was and are getting the best treatment for it. Must have been so frustrating having to cancel trips but health should always come first

Thanks for noticing, Suze. I’ve had to cancel a lot of trips and turn down a lot of opportunities since this all began, and it’s been frustrating. Hopefully it will open the doors to something better down the line.

I have always believed that without our health we have nothing. This will be a chance to build myself up from nothing and become a stronger person in the process.

I’m so glad you finally shared this story. Not only is it eloquent and well-written, it’s also extremely relatable. I think it’s so important to spread the word about Lyme Disease, especially since it’s so under-diagnosed. I’d never even really heard of it until you told me about it! Hopefully this post will help other people get the treatment they need so they won’t have to suffer as much as you have this year.

Please get better soon so I can treat you to a huge bowl of dumplings in Beijing 🙂

It’s so underdiagnosed it’s almost scary. Medical science today isn’t sophisticated enough to be able to catch it 100% of the time, which means many blood tests wrongly come back negative. I’m just glad I had the positive blood test to prove it.

I’m gonna hold you to that offer. Things are going to get messy once I get my hands on a tray of dumplings!

one of the best reads yet..sorry about what ur going thu..but im a lyme suriver..and tonight is a bad night for me..ive tested pos 28yrs ago when i was a young woman who was teaching tennis..which i miss so much…im 28yrs cronic..but i have gotten somewhat better..reading ur blog..and feeling what u were going thu…yes it home thx for writing..keep on..cindy with a twist o lyme..phx az..prayers to u and urs.

I read about Lyme disease for the first time about a year or so ago. The symptoms sounded familiar to something I was experiencing, but brushed it off. I’m an avid hiker and spent a lot of time in the bush. But my tick bite actually occurred, believe it or not, in a Starbucks. At that time I’d never heard of Lyme disease and I didn’t even connect that it was actually a tick until several days later (because of the odd location of where it got me). It’s been approximately two years since then, and I’ve complained to friends and my doctor about a host of different seemingly unattached issues. I just found your article yesterday and started to do some research. I have an astounding level of symptoms and some of them I’ve experienced quite severely. I am going to see my doctor about getting tested as this would explain so, SO many things… thank you Jeremy. I’m glad you’re mending and hopefully I will be able to as well.

Wow, Jeremy. It was about a year ago that I discovered you and your blog and I was wondering what changed. I’m thankful that you chose to share your struggle. I’m sure your experience will resonate with many people out there. Or at least generate awareness. I grew up on Cape Cod where deer ticks are prolific and Lyme Disease is far too common. I first learned about tick checks as a toddler, but really never thought about where else in the world Lyme was present until now.

I can’t tell you how much this article hit home for me. I’m a fellow Lymie and commend you for writing about your battle, as it is not easy. Your writing is amazing. Your positive attitude is uplifting. You gave me hope. Please take care of yourself so that you can continue with your dreams!

You are still traveling, it’s just a different journey and an additional/different audience that needs to hear what you have to say. With a destination that is less clear. You’ll come out on the other side – I have seen a two year transformation of a 10 year undiagnosed you man, with the right doctor and your commitment, you can come out clearer, smarter, and stronger than you may have been in a long while…. If you can get awareness for just one parent for one child, for one nurse, one doctor, one chronically ill person – which it seems you have already – you have made a huge difference in someone’s life.

Another lover of travel here, slowed down by Lyme. I like to listen to the folk song “keep on the sunny side” when I feel down about it. Wishing us both swift return to normal. What coinfections did they find?

Most people I know with Lyme has 10-15 co-infections, like mycopasma & chlamydiae pneumonae in the brain, rocky mountain spotted fever, ehrlichia, anaplasma, dengue fever, Epstein Barr Virus, Cocksackie, Cytomegalo, Prevotella, Citrobacter Amalonaticus. I think you need more comprehensive blood tests to look for other co-infections and parasites. I pray you will quickly get better & be able to resume your travels. God bless!

Thanks for sharing Jeremy,
I have been travelling for 40 years until Lyme hit. Lived in Bali for 25 years and travelled from there a few times a year. I got Lyme 4 years ago, I think it was on a trip to Thailand / Bangkok. I am still in recovery and have been forced to move back to Australia to calm my system and get treatment which sort of worked and sort of didnt. You know how it is. I cant cope with heat which is a major issues living in Bali so I can only go in the cooler months.
Take care, be well, surrender to the process.
See you on the road
Best Saraswati

Do you mind sharing who you saw in Denver? I have scheduled an appointment for my daughter to see a doctor in Denver for Lyme Disease. It will be our first visit with him–but not our first visit to see a doctor. (She has seen almost 20 doctors). I’m wondering if it’s the same doctor. Our family loves to travel, but so many trips and activities are crossed out now as every day and every dollar has been allocated to healing. I hope you continue to heal.

I just found this link. About 5 years ago I got Bell’s Palsy and my biggest complaint was that it felt like my brain hurt. The neurologist kept saying “you mean you have a headache?” NO my whole brain hurts!! Lat year my legs started going (i’m 54) and I have lost more memories then I can stand. I figured it out and spent money for the REAL blood test in CA and a SPECT scan of my brain. Almost $6000 later… Lyme and 3 of it’s friends. My brain is swollen and infected and finally my family believes I’m sick and not just being lazy. I totally relate to all your issues and hope you have beaten enough of all those evil things to allow you to go back to your amazing life. My former life plan was save until I turn 50, sell everything and travel. Well…then 9/11 happened and I met a guy, and then we eloped and I got pregnant… LOL Not the life I planned but it’s wonderful most days. Thank you for sharing.

Thank you for deciding to open up and share your journey with this disease. It is an extremely isolating disease. I feel less alone after reading your account.
As someone who has never shied away from adventures and travels, I’ve always found peace and fulfillment from hitting the road and exploring the unknown – lymes, babesia and bartenella threw me for a loop as well. Turned my world upside down- suddenly I couldn’t handle busy filled streets with rich smells and sounds without becoming paralyzed with panic and anxiety. And forget reading a map- couldn’t navigate my way out of a paper bag. After 20 years and Intense medical treatment it is better- but it still cycles. However I’ve decided to find growth in the challenge and have worked on shifting expectations of myself- of my ego – and find unexplored experiences at a different level.
So I couldn’t hike 10 miles one day like I used to but maybe that day I could do 5 miles or even 2 miles on a new trail and really absorb all that I could in that experience. Maybe I was moving slower so I saw things that previously I was too busy moving to see.
It’s a journey for sure! You are not alone- keep up the beautiful honest accounts of your travels. I know several people who will appreciate them exactly as you are experiencing them. Thank you again for your sharing! May you continue to heal and grow.

Thank you for those wonderful words, Paula. It’s those same three that I’ve been battling as well, and it’s not pretty. I’m sorry you’ve had to deal with it, too. For now, the busy streets and rich smells are put on hold, but someday soon I’ll be right back where I started.

Sick for 15 years and not getting very far. It is great to see that someone has improved, even if not “cured”. Travel is but a memory of mine…and not too keen at that. I am glad to have found your site and will follow vicariously. Yes, it is worth it to spend the money on Lyme treatment, IF you have it. Not many sick with Lyme can even afford their groceries.

Thanks so much for this. I’ve had lyme for almost a decade and finally got my diagnosis after seeing two LLMDs this past month (bit ironic, no?) I’m on the front end of treatment, and a little terrified of how bad it might get and how long it will likely take, but so far I’m already doing much better, and I’m able to write most days, which is my profession. I’ve also been very public about my struggle to raise awareness about this monster of a disease ands its coinfections. Every story and bit of advice I’ve found from others brave enough to speak out has shored me up tremendously. I hope it does for you, too. There are so many more of us out there struggling with this than you can imagine. Keep living life, and take good care. Thanks again.

Your story truly touched me. I have a friend who is going through the same but he has had it for about 9 years, I think. I can not relate but now I want to learn more about Lyme and want to try to help in what I can as I never knew about Lyme until I met my friend. Best wishes on your travels and recovery.

It’s amazing that you are being so supportive. That is the best thing you can do for your friend—offer unconditional support. It may not always make sense from the outside, but I assure you, it’s so, SO appreciated. Thanks for being a strong advocate for your friend 🙂

Your story and story of recovery deeply touched me. We are a family still living with the devastating affects of Lyme and numerous co-infections. I have 16 year old twins who dropped out of school two years ago, one is in a wheel chair and in horrible pain 24/7, the other cannot read or focus and has constant headaches. this has been going on for four years.
getting a diagnosis was very difficult. My kids were ridiculed and my husband and I considered crazy.

A friend of a friend committed suicide 18 days ago due to this dreadful disease. She was sick of the pain and isolation.

After getting a Western blott and a doctor who could read one ( they were off the charts) we finally are on the road with a great group of health care professionals.

You’ve given me hope today that my beautiful sons will have a life again! One day at a time if we stick together and share our stories – we will break the stigma and misinformation surrounding this horrendous epidemic.
We need funding and research, it will come if we keep sharing.

We moved to Denver to be closer to our Doctor. I would love to know who yours was??? Please email me.

The response to this disease by the medical community is deplorable. I am so sorry to hear that your family has been struck in such a tragic way. The diagnosis is the first step, and though treatment is tough, at least you are now on the right path.

Great story! I have been battling Lymes for a couple years now. I’m sitting at the 75% mark, about to run, hike and wakeboard now where I couldn’t even walk down the street. I still have work to do so I can get over this hump I seem to be on. Right now my brain fog is still bad and would love to get it cleared up! One day at a time!

I loved and shared this. At the end of the article, though, you say, if treated early, a few weeks is abx should do the trick. However, while my Lyme was caught early, I’m still struggling, and the Bartonella coinfection was missed. Even your own case is proof that it comes back. The CDC needs to do better by the public with this one.

Thank you for being brave enough to bring the horrid reality of this disease to the many who read your blog. …It’s being shared in the Lyme facebook groups and I’m sending it to my family. We need heroes 🙂 I, too, am incredibly stubborn and determined and active, at least I was until I contracted Lyme and lost my job of 22 years. (Night shift X-ray ). Thanks again. Never give up.

There’s a flip side to your disclosure. I would never have found your website without it and I’m hoping I’ll be well enough from chronic neuroborreliosis to travel soon, so maybe I will need it!

I can totally relate to your journey. 15 years, 23 doctors, 3 LLMDs and huge amounts of money, BUT contrary to what IDSA/CDC seem to think, long-term antibiotics really DO help and I’m doing a lot better now than I was before we started treatment.

BTW, if your local LLMD stops making progress on your case for more than 2-3 months, I’d consider moving up the chain of doctors. Keep in mind that there are beginning, intermediate and advanced practitioners. If Dr. Horowitz in NY is closed to new patients, I’d recommend Dr. Stephen Phillips in CT. All you’d have to do is travel. 🙂

Thanks, Jonathan! I feel like I’m just hemorrhaging money these days…I’m sure you can relate 😮

I’ve been seeing my doctor for about seven months now, and we’ve made progress, but it doesn’t feel fast enough. Horowitz isn’t accepting new patients, but Jemsek in DC is, and I’m going to take a look at Phillips in CT. I’m not tied to any particular location, so traveling to see a doctor isn’t a problem 😉

Thanks so much for sharing, I am in my late 40’s I have travelled the planet extensively as a back packer twice at a year at a time. I was a tour leader. I ran a small company in health care and I got Lyme. I always had 3-4 trips planned and was getting ready for Everest base camp when I admitted to my sister I just could t do it. I had been faking it for 2 years and met my wall. No matter how healthy how Rae etc I ate , exercised I got worse not better. A ND Doctor convo lunches me I have Lyme and was tested. no one professional in Canada other than 2 Md’s support me. Your story is so similar to mine with being over sees in a place I should be having an amazing experience and I was all in my head. here’s to better days for all of us and getting back on the road.

Was trying to edit my post as so many errors. But just want to say. I tried to work through and push through and I have always been a leader and independent person I really don’t know if people know how much it affects you and changes you. I told my mom a little while ago i used to travel the planet with no concerns now it takes me everything to leave my apartment and go to the store or work. I’m the same person on the outside but everything is a mess on the inside. Neurological changes were what pushed me to pay cash to find an answer. Sorry for the first messy response. Your article really hit home for me.

Thank you for sharing your story. Indeed, life is a journey. You’ve raised awareness to the debilitating affects of Lyme disease and you enlighten us on how other cultures view illness. We can stress about and wallow in illness, or we can slow down and embrace the beliefs of the Chinese – that sickness is a form of rebirth. Indeed your journey brings us to not only new sights but to a different way to look at life. Slow down, enjoy the rebirth, and thank you for sharing!

Thanks so much for sharing your story. I’m fighting similar battle as have the same two co-infections as you. Unfortunately Lyme isn’t even recognised in Australia so even my tests had to be sent to California and I just came back from trestment for borellia in Germany. I’m now trying to tackle the bartonella and babesia. I’m told the babesia is the hardest to get rid of. Doyou mind me asking if you’re doing antibiotics/herbal/both. I’m always interested to know how others are approaching it esp if they have access to a LLD. Sounds like you’ve got someone good treating you. thanks in advance

Hi
Thanks so much for your reply. I went to Klinik St Georg. I did antibiotics while there but now trying herbals, supplements, saunas and IVs (Glutathion, PC and vitamin C) as well as Byron white formulas specific for Bart and bab.

I agree that all need to be tackled head on. Different stuff works on the different infections it seems. The trestment in Germany is mostly effective against the ones that are heat sensitive though they did do some IVs and ozone for the others that are not.

Treatment in Aus is a battle. You have to be your own advocate and find your way through it all. I’m getting more open about sharing y story too in the hope that one day people will have an easier path to follow and get the help they need.

I also shouldve mentioned that I have found help but mostly from complimentary therapy practioners. Not mainstream and almost none of the expenses can be claimed on health funds or Medicare but still I’m getting help and so grateful for it. I totally related to your article in that you have to spend what you need to in order to gain your health back again if at all possible. Once well I can earn it all back again I hope.

Just thank you, thank you for sharing your story. So beautifully written!! This really is a scary pandemic and I am so grateful to you for advocating for all of us affected by Lyme (Borrelia) and Co-infections! x

Thank you, thank you, thank you for being vulnerable enough to share your story so honestly! I just found your website because of this post. Lyme Disease (+ plus its fun co-infections) brought my life to a screeching halt several years ago. I’m a traveler at heart and it is a constant battle between what my mind/heart wants to do and what my body will actually let me do. Your words echo my experience and are so encouraging. You gave (even through the brain fog!) such an accurate and clear glimpse into what living with Lyme is like. Keep pressing on! I know there will be many more adventures and travels in your future!

Hi I just wanted to let you know that we as a family have been CURED for the past 4 years by a bio-Photon Frequency Light Machine invented in VANCOUVER BC. by a practitioner of 20 years. We own multiple units that we rent out, CHEAP. We have sent them out to Australia, France, and all of North America. Many of the Hollywood stars have used it and are now symptom free. If anyone is interested to hear more you are welcome to inbox me, if it is available or I can call anyone and explain it better. Thanks!

My wife has suffered for four years, three of which were spent with doctors knowing nothing and all tests coming back negative, including a brain MRI. Thanks for posting this and sharing your experience. She is now working with a naturopath but it’s still a long hard road. One prominent symptom is her brain running at half speed.

As the mother of this courageous and adventurous young traveler, I will give my own testimony: I suffered with Lyme Disease and Babesia for six very long and difficult years. But I am well now, symptom free for over three years. I’m incredibly stubborn too, and it took a lot of persistence (as well as patience) and some very good doctors to get me where I am today. Never give up hope! There are many resources available and much support if we share our stories with each other. Jeremy has helped to raise awareness about a devastating disease that is misunderstood and under-researched. To help fund badly needed research that can make a difference in the lives of people suffering with this disease, contact the Lyme Disease Research Foundation at www,lymemd.org.

Just sort of read your blog post to the best of my impaired ability. I was infected with Lyme about 15 years ago and was recently reinfected with Lyme and Bartonella. Your story resonates with me. I am finding it humbling to have these two infections together. It really is cruel punishment. I am in the beginning of my treatment and can only hope that a year from now I am feeling much better. Good luck to you and I wish you healing.

Very well written piece. You verbalise eloquently aspects of what Lyme sufferers endure. There are so many variations of a theme, including the pains, neurological, mental and emotional conditions.
I mirror many of yours.
After an initial diagnosis and a month of antibiotics I tried to continue with normal life without success. I’m out the other side, although I don’t believe it’s ever fully gone. The best advice I was given is to remember the human form is a bank of energy, you have to manage your account, take note of the deposits and withdrawals. That is, the daily experiences and impact on your mental, emotional and physical self.
Once I accepted I was ill, stopped trying to push on and began to rebuild from a base level, which included medication, nutrition, epsom salt baths, coconut oil drawing, rest, no electronics, no deodorants, juicing, turmeric, watching the phases of the moon, staying out of the sun, herbs and all the other good stuff, I began to help my immune system tip the balance and start the ‘long walk to freedom’.
It took 12-18 months after a few years of suffering as I had coinfections to deal with.
For those reading this article that are suffering take all the guidance and information you can, keep a diary to see and review what helps, what doesn’t and what impacts you the most. Everyone is different and you need to find your medicine.
Trust me I went from being unable to walk, see or communicate properly to a more active life than I had previously, because I value my life more.
Good luck on your journey, I sincerely wish you well.

Thank you so much for sharing your story, Roger. I haven’t come across too many success stories lately, though I imagine that’s because the ones who have healed are out living their lives–when this is all over, this won’t be a time that I’ll want to look back on.

I’m keeping a daily journal of my medications and how I’m feeling. I’m on a very restricted diet and taking lots and lots of supplements (including turmeric). I also take an epsom salt bath every night. I’m glad to hear that these things all helped you to get through it, and I hope to be on the same path, not too far behind.

Thank you! I read this & cried. It’s so hard to explain to people that because you look the same as before doesn’t mean you are. I’m studying for a doctorate and working fI’ll time (well, I’m supposed to be….) and the inability to form thoughts properly and forgetting the simplest things is really frustrating; your description of the fear of a kind of concious dementia is unbelievably accurate. I can’t decide if the impaired cognitive functioning or the constant pain is the worse 🙁
I feel a lot less isolated now. Thank you!

I have been recently diagnosed with Lyme, Bartonella and Mycoplasma. My tick exposure was at age 9, followed later by a 2 month hospitalization for what they thought was hepatitis B. Age 14, depression and anxiety started with cognitive changes. Age 17-20 major depression with 2 suicide attempts. I began mindfulness, meditation and self help instead of drugs which weren’t helping anyway. Age 21 started back pain. By age 26 the pain was so severe I had difficulty caring for my baby. Again round and round with Orthopeds, spinal surg, pain management, etc…. Same story after story…. Fibromyalgia, depression, psychosomatic illness, degenerative disc disease, arthritis, bone density problem, gastrointestinal problems, sinus and respiratory problems, muscle spasms, ear pain, changing eyesight, vomiting, chronic fatigue, bronchitis, chronic Inflammation, vertigo, weakness/malaise. “We don’t know what’s wrong, take this medication and come back in 2 weeks”.

20 more YEARS have passed. My primary care physician told me, “I don’t know what else to do for you!” I sought out my own diagnosis through research and my sister saying, “What about Lyme?” You never want to hear positive test results but after almost 35 years of being told it’s all in my head, and I’m making it up for attention… Something has finally proven there’s a reason WHY!!!!!

My heart ? goes out to all those who are suffering or who are caring for someone with Lyme disease!

Jeremy— My heart goes out to you as I read your article about your last year. I share the journey of figuring out this horrible, mysterious and often-denied disease. Mine went misdiagnosed for 16 years until I finally got to a lyme specialist. I was one who never tested positive on blood tests (confusing experts at many places including the Cleveland Clinic) yet had almost every clinical symptom. My doctor allowed my to choose to do the protocol for lyme (and at that point what could it hurt—– I only wanted to die to get rid of the constant pain). After the 14-month antibiotic treatment, I moved from the stranger I had become, to feeling human again, and then to feeling like Mary again! In the words of my family, “It’s so good to have you back, Mom.” It’s been another ten years since that initial treatment and I”ve learned a lot through several “flares” which required treatment. The disease manifests itself in so many ways that it is called “The Great Imitator” because it mimics many others. I, too, feel I could and should write a book, especially since I took early retirement from my teaching position because the numerous health issues related to lyme. I do want to encourage you that you will have some ups and downs, but your determination to lick this thing will help you win in the long run. My best to you!

Thank-you so much for this post. I don’t have Lyme, but I do have late stage Rickettsia and Leptospirosis infections. The symptoms are much the same. I applaud you for writing this piece as I know it must have taken rather large amounts of courage to share something so personal. Please continue writing about your experiences – you are a voice to many who feel unheard.
Sending Regards from South Africa!

I’m sorry for what you’re going through but if the comments are any estimate, you have really done the community a service by writing this post. It’s not “sexy” but necessary. I hope to catch up one day in Asheville!

Hi. I’d love to send you a private message but I’m not sure how to do that. This was the first of your blog posts that I’ve read and it resonated in many ways. I love traveling – we went to some pretty remote places prior to tackling a mortgage and a kid (he’s 11 now and ready to travel but I’m in my second year of intensive treatment for Lyme, babesia, and bartonella and this summer I find out if I passed the infections to him during pregnancy). I was misdiagnosed for almost 15 years and like you I pushed myself until my brain and body completely shut down on me. I live in Clark, Co with my husband, son, and two pups. My doctor is in Denver. I’m definitely getting better but so still have a long way to go. After reading your blog I was curious if we were being treated by the same doc. If you have the time please send me an email – I’d love to compare notes on treatment (blech) and travel! Best, Kathy

I’m so sorry to hear you’ve been going through this, Jeremy. It must have been a terrible journey for you, but I admire your stubbornness (I’m kinda like that as well.)
I can’t say anything that hasn’t already been said on here. I just hope you’re feeling better and you’ll be back to normal asap. X

Age and or illness will eventually teach most of us to learn a bit about how to pace ourselves and to start to pay attention to what our bodies are telling us. Your cautionary tale about your experience with Lyme disease is a real eye-opener as you described your symptoms so well that I certainly felt I could suffer along with you. I guess that is proof you did a great job of writing about it. Enjoyed reading some of your travel blogs too. Depending how things develop (post coup attempt) consider adding Turkey to your list. They once controlled many of the countries you’ve already visited.

Hey Neil! I’m a strong believer in signs—we just have to listen to them. I think I ignored the signs for a long time and am paying dearly for it! If not stronger, I will definitely be wiser, that’s for sure. It sounds like you might know a thing or two about this, too.

Turkey is high on my list! Especially after visiting the Balkans, I’m really interested in learning more about the Ottoman Empire!

Wow. Thank you for posting this.
I was already drafting an email to you after having read a few of your stories and then I read this one and am even more inspired to connect with you.
I will be emailing you shortly and I look forward to your response but for now let me say how much I honor your courage to post this story. I tip my hat to you kind sir.
These stories are what life is all about. People like positive and exciting…. but people crave connection and real truth. This story speaks louder and farther than you may imagine!

It’s often to hear people share their success stories but I love that you are able to share you vulnerable moments with readers like us. It makes me really inspired and want to read more. It’s great to hear that you are on the mend and I can’t wait to read more of your blog! Thanks Laurie x

It takes a brave soul to put a life-changing illness on pen and paper, or in this case, in virtual reality. We have never met, but I’m sure that you’ll make it through. But know this, the travel community, and the world at large, will always support a person who is authentic, open-minded, and most importantly, human.

I hope you get better soon, and continue your adventures and your travel journey. xx

Hey Victoria! I know I’m late to reply, but I just wanted to say a big thank you for helping to reaffirm my decision to share my story. It was difficult to decide, but I’m sure now, more than ever, that it was the right choice 🙂 x

So sorry about your daughter. I can’t attribute getting better to one particular thing. Lyme is extremely complicated (as you know) and my recommendation is to start looking beyond Lyme—toxic mold exposure, candida, and other co-infections go hand-in-hand with Lyme. It’s can be a “perfect storm” situation—a whole mess of things that all need to be treated. Best of luck to you and your daughter!